Late-Life Disability and Care: An Update From the National Health and Aging Trends Study at Its 10-Year Mark
Year: 2022
Type: article
Abstract: Recognizing the shifting landscape of late-life disability and care, in 2008 the National Institute on Aging (NIA) funded a new national study of disability trends and dynamics. The National Health and Aging Trends Study (NHATS) is designed to foster a deeper understanding of national trends in late-life functioning, individual trajectories in functioning and accommodation, how these processes differ for various population subgroups, and the consequences of late-life disability for individuals, families, and society (Freedman & Kasper, 2019). The National Study of Caregiving (NSOC), a supplement initially funded by the Department of Health and Human Services’ Office of the Assistant Secretary for Planning and Evaluation (ASPE) and now by the NIA, interviews family and unpaid caregivers of NHATS participants—and, in doing so, provides a bridge between caregiver and care recipient perspectives. As NHATS was getting underway, I first described the NHATS late-life disability framework and its potential to open up new areas of study in a series of editorial exchanges (Freedman, 2009). Four features of the NHATS framework were highlighted: (1) distinguishing between capacity to perform and actual performance of a range of activities to support study of how accommodations might bridge gaps; (2) explicit recognition that the environment plays a role at every stage of the disablement process; (3) use of positive analogues for concepts that have traditionally been expressed in terms of loss, which bring into focus questions about how best to maximize functioning of older adults, irrespective of their stage in the disablement process; and (4) the ability to support study of participation in productive, generative, community, social, and civic life. At the time, the NHATS disability assessment was under development and had not yet been validated. The commentary ended with an aspirational statement: “as in ‘A Field of Dreams’—if we build, validate, and disseminate such measures,” the research community will surely come. In May 2021, upon release of its 10th round of data, NHATS celebrated this milestone with a 10th Anniversary Virtual Conference jointly sponsored by the Disability TRENDS network of the Michigan Center on the Demography of Aging. A call for papers was released to thousands of registered users. Abstracts selected for the Conference offered a forum for investigators from diverse research perspectives to present findings from NHATS and NSOC and to celebrate the scholarly successes of the NHATS research community. Scientific presentations covered three broad thematic areas: late-life care trajectories; late-life disability precursors and consequences; and family caregiver well-being. In addition, several members of the NHATS leadership team shared reflections about the study’s initial decade. This supplemental issue provides an integrated, peer-reviewed forum for many of the papers presented at the NHATS 10th Anniversary Virtual Conference. It also honors the memory of Dr. Judith (Judy) Kasper, who passed away suddenly in August 2021. Judy’s imprint on NHATS and NSOC and their scientific impact, like her influence on so many colleagues and students, is both deep and abiding. She was passionate about accurately capturing the daily experiences of older adults and their families so that policies and practices could be put into place to improve their lives. She brought together a group of knowledgeable coinvestigators who appreciated teamwork and consensus building and were committed to meeting the demands of launching and sustaining a new national study. She also ensured that the research community had the tools to use the data easily and appropriately. A brief tribute to Judy as a collaborator, mentor, and friend is included in this issue. This introduction provides a brief background on the development of NHATS and NSOC, followed by a summary of reflections on the study’s evolution presented at the NHATS 10th Anniversary Virtual Conference. A final section provides an overview of the collection of papers that follow, emphasizing crosscutting themes that highlight the unique strengths of NHATS and NSOC. NHATS and NSOC are led by faculty from the Johns Hopkins University Bloomberg School of Public Health and the Institute for Social Research at the University of Michigan, under a cooperative agreement with NIA. The Principal Investigators receive scientific input from a multidisciplinary group of coinvestigators and two advisory groups. Westat conducts the fieldwork and disseminates the data to users through the study’s website, www.nhats.org. The first round of NHATS took place in 2011. The study gathered information in person from a nationally representative sample of more than 8,000 Medicare beneficiaries aged 65 and older, with oversamples of Black enrollees and older age groups. In each subsequent year (through 2021 as of this writing), in-person interviews have been conducted with participants, with one exception. In 2020, as a consequence of the uncertainty surrounding the coronavirus disease 2019 (COVID-19) pandemic, a phone interview was conducted. Replenishment of the sample to maintain its ability to represent the older Medicare population took place in 2015; another replenishment is planned for 2022 and will include an expanded (add-on) sample of Hispanic beneficiaries. A core feature of the NHATS interview is its validated disability protocol (Freedman et al., 2011; Freedman, Agree et al., 2014). The instrument collects detailed information on participants’ physical and cognitive capacity; how activities of daily life are carried out; the social, physical, and technological environment; and participation in valued activities. A series of activities performed by respondents provide complementary measures of physical and cognitive capacity. The disability protocol was augmented in 2021 to include tablet-based assessments of sensory (hearing, vision) capacity and cognition and the collection of physical activity data from a subsample using actigraphy. In addition, in each round, information is collected on living arrangements and the home environment, services available and used in residential care settings, economic status and well-being, and aspects of early life. NHATS has several additional components that enrich the main interview. The study systematically identifies the types of settings in which older adults live so that community, residential care settings other than nursing homes, and nursing homes are delineated. Rather than rely solely on participants’ reports, NHATS interviews a facility staff member to confirm the type of place, and for places with more than one level of care, the level in which the sampled person currently lives (e.g., independent, assisted, special care unit, nursing home). For those who die between rounds, a Last Month of Life interview collects details on place and quality of end-of-life care and daily activities since the prior interview, allowing study of the disablement process from onset through the end of life. Following the 2020 interview, NHATS participants and up to two family members or friends who helped most were invited to complete a COVID-19 mail supplement about their experiences during the pandemic. Linkages to Medicare files and geocoded files have also been made available to approved users. NHATS also collected dried blood spots in 2017, which were assayed for glycosylated hemoglobin (HbA1c), high-sensitivity C-reactive protein (hsCRP), Cytomegalovirus (CMV) and Interleukin (IL)-6 and genotyped. NSOC is a nationally representative study of family and other unpaid caregivers to NHATS participants receiving assistance daily activities (Freedman et al., 2019). The 30-min interview includes questions about activities for which help was provided, duration and intensity of help, effects on helpers of providing assistance, support services used, and basic demographic information. Rather than identify a single primary caregiver for interview, interviews are attempted with all eligible helpers for whom contact information was obtained. NSOC was intermittently fielded (in 2011, 2015, 2017) and will be fielded annually beginning in 2021. Together NHATS and NSOC are the only national study providing both care recipient and caregiver perspectives on late-life care. NHATS also offers the research community guidance on how to construct a validated measure of probable, possible, and no dementia (Kasper et al., 2013). NHATS assigns probable dementia if the sample person or proxy reported that a doctor told the sample person that they had dementia or Alzheimer’s disease; a score of 2 or more on the AD8 Dementia Screening Interview, an informant screen used to detect dementia that was administered to proxy respondents in NHATS (Galvin et al., 2005, 2006); or scores at or below 1.5 standard deviations (SDs) from the mean in two of three domains based on tests measuring memory (immediate and delayed 10-word recall), orientation (date, month, year, and day of the week; naming the President and Vice President), and executive function (clock drawing test). Possible dementia is assigned if the sample person scores at or below 1.5 SD in one domain. As of this writing, NHATS and NSOC have been used in nearly 500 peer-reviewed publications. Physical functioning, including mobility, has been the focus of more than 90 publications to date; dementia and cognitive functioning have been the subject of more than 100 publications. NHATS and NSOC have also made extensive contribution to the scientific literature on caregiving and caregivers, with more than 100 publications to date. A substantial number of publications (roughly 50 or more) also focus on activity limitations or participation restrictions, racial/ethnic differences in various aspects of the disablement process, end-of-life care, health care use, health conditions (including multimorbidity), social isolation and social support; subjective well-being, and depression or anxiety. A growing number of articles focus on the COVID-19 pandemic and its impact on older adults and the family members and friends who assist them. A searchable, key-worded bibliography is available on the NHATS website. Dr. Kenneth Covinsky opened the conference with his thoughts on the unique value of NHATS. He underscored that NHATS has advanced understanding of late-life disability among older persons as a public health issue by providing a window into the disablement process that is typically invisible to health care providers. The rich data allow clinically relevant stories to emerge that matter not only to older adults but their families and caregivers. He explained that NHATS provides insight into not just the presence or absence of disability, but more granular measures of disability that affect how older people and families adapt, through use of devices and environmental modifications and receipt of help from others. Rather than emphasizing the prevention of disability, NHATS provides insights into how we might improve the lives of older adults as they develop limitations. The study points to how to preserve well-being and foster participation in activities that are valuable to older adults. The study also characterizes paid and unpaid caregiving and use of medical care through the survey and through supplemental linkages to Medicare records. He challenged the audience to consider how the research to be presented over the next 2 days would be carried out without NHATS. He asked audience members to consider, what would be the time and of the primary data collection He underscored that NHATS is of value to the by findings by many by the for primary data collection for many and by development for Dr. Judith an on building the NHATS community. She explained that support and have been components of the for NHATS since its She described the many that NHATS has to help users the (Kasper & Freedman, more than for a a of and between the in the interview and the in the all available on the NHATS a a of NHATS by a to users how to the NHATS into and an of In terms of release NHATS an initial release the end of fieldwork and a final the Dr. shared of of the presentations about the were but among the investigators was At the time of the Conference in May 2021, the NHATS community had to more than registered a of social, and including more than 500 registered to use NSOC files She also the scientific of the NHATS community. At the time of the more than publications using NHATS had in over 100 She celebrated the with or more publications using NHATS and the nearly additional with or more many of whom are early National Health and Aging Trends Study registered users and publications by Dr. in study of disability trends among the older She that NHATS a of how might influence about The study team to in and to to a to of physical activities. also the potential influence on trends of many other about the of replenishment in fieldwork by the COVID-19 pandemic, and the of new this introduction as a Dr. explained that NHATS and NSOC allow study of both and more trends in activity limitations and care be used in with the National since both were from the Medicare have sample and a of questions (Freedman & et al., et al., to trends since 2011, NHATS has an of trends in with the Michigan Center for the Demography of Aging at and (Freedman et al., with through 2020, which they to The are designed to understanding by and care of how daily life is for older adults as the population and of Westat shared insights into the role on NHATS. described as the of the since the only contact that most study participants have with NHATS is through the The role is they each for in-person every contact interview and in a and for the physical and sensory for and all to and in NHATS also a role in contact information for family and unpaid helpers so that they be invited to in NSOC. The study has also more over in 2011, for NHATS in an in 2021 were to the with a is conducted to are in a have been designed to bring into the home and in an in-person prior to was early on to from initial In 2021, a and was as a of to the COVID-19 pandemic. NHATS to of both and in-person from through 2021, NHATS has more than a described several by NHATS in an to during replenishment For since have been used to and at the and both the and be used to of of in files have and to be to In addition, and daily of allow to in including like contact by day and are designed to both quality and in Dr. Agree her reflections on development of scientific She that in to the call for from NIA, we had an initial to the National or a new was broad consensus among the team to a new study for the that would the in which older adults in the services and allow investigators to for in disability, and the ability to the disablement process from onset to end of life. was agreement about what to call the study. were to at the National Health and Aging Trends Study more its Life as Dr. Agree also shared of the process by which a consensus was on instrument The study from a focus on the and consequences of disability trends and trajectories and by a framework (Freedman 2009). The NHATS framework upon the of Disability and Health Health by and on the disablement process & and research funded by to the role of and environmental modifications in disability (Freedman et al., with the Health and Aging Study (Kasper et al., also scientific measures and the development of NSOC. NHATS also from a team that had deep scientific was open to and to the time to a national study. The by and a scientific advisory the domains of the study. questions were to about not initial for interview the study’s of 2 At a meeting in coinvestigators on 100 of study be for physical performance This helped the of time in the core instrument as questions for the National Health and Aging Trends The papers in this the and of the NHATS and how be to both and new questions late-life disability and care. As a the papers to the study’s to to disability, maximize functioning, and quality of life of older papers focus on the of those living with use NSOC to bring the of family members who provide care. papers in this three broad areas: (1) how assistance with activities in life over (2) with in care and (3) caregiver experiences and well-being. national to improve care for older adults, and dementia care in have not had trajectories of care to Four papers in this collection questions about how assistance with activities over time for older adults et al., et al., et al., et al., As a the papers new information that help older adults, those who care for as as their health care care and highlight The papers differ in terms of and and colleagues and and colleagues focus on trajectories of care and colleagues focus on trajectories of health care use and the onset of and colleagues focus on activity limitations that into and environmental Freedman, et al., & of the papers upon that allow to be based on over time et al., for of and in findings from these The a among are by effects for each individual in the and colleagues focus on trajectories of paid and family care among those living with dementia in community they three those with arrangements of or no paid care and of family care those with of both paid and family care and those with of family care that over time by of paid care The and more substantial of paid are by receiving help with a number of and activities. the group of family care and of paid has a of and with more and more of social The that among a group of older adults who have care trajectories are call for more to to paid care for those living with and colleagues focus on trajectories for of care, and unpaid by those living with and without they and The have the of care with dementia and for nearly of that A substantial of the in older adults with dementia who were to be in the live in residential care that use such findings to for additional caregivers or for residential care as and colleagues focus on trajectories of health care use and onset of help with or activities. that the of health care use and in the onset of identify three health care use and delayed with and the use of health care the of care. and colleagues focus on the between and subsequent activity to differences by and in the of of limitations that from that of and to a racial/ethnic group are with of mobility, and activity limitations. in in and those with in in and activities. those with the of Black older adults a of in activities to older adults. The that findings the to to care and that are to the to which available and in functioning in life. A by two additional on that are with care by older adults. NHATS measures care by about consequences that be to the absence of help and they in the For NHATS participants to in the they had to without or without getting out of or their home no one was to help or was to on and colleagues the role of of a family such in life. and linkages between (in the and in over and a of care distinguishing those receiving only unpaid care, paid care in the community, residential care, and nursing home care. Together the papers and to two to those in families and those receiving paid help in the community. Recognizing the of among more of older adults, and colleagues use the round of NHATS to among older with care of care from and differ between those with focus on older adults receiving help with mobility, or activities for health or functioning or an for assistance or in residential care. also or paid care for The that older in of care are more than as to receive care from their if they have of among older not differ by family of or paid care. findings be about the of the of families for older adults with care they also call for more to the of among older with care that of family and the between and type of care include older adults receiving assistance with at one mobility, or activity for health or functioning in of in community settings to residential care. In those living in the community receiving paid care have about the of to those living in residential care. The of (in both and 2017) is for those receiving paid care and nearly three for those receiving only unpaid care in the community to those in residential care. The that more is to how paid care arrangements be to the of older adults. The final of three papers provide insights into family and unpaid The three papers of the unique linkages NHATS offers with data collected from caregivers in NSOC. For and colleagues the NHATS and NSOC to identify care that of care and care activities. and colleagues from the 2020 NHATS and the supplemental and COVID-19 to in the of care during the initial of the pandemic and with well-being and colleagues to three of NSOC to NHATS to linkages among family and well-being among caregivers. and colleagues identify care two more and three that caregiving caregivers, those for persons with and those with paid of care are more to more care. caregivers and those who receiving support with their caregiving activities are to be in a care The that of care types help of in caregiving and caregiver support services and and colleagues how and care during the onset of the COVID-19 pandemic to of caregiver well-being. that most caregivers out of no in care an and a in The most for the of care is to their care recipient from COVID-19 to those with no both an in intensity is with health and and a is with to care and of positive to to support caregivers during and colleagues the intensity of family caregiving and by their well-being. three of NSOC to they to identify the impact of which they as at time (e.g., of care on both positive and measures of well-being. In doing so they use an which to of in the among and well-being (e.g., those with well-being be to provide of care and The of that are to but not well-being to identify in this family of that the care recipient for caregiving and age for that providing of care or more to a of but not and quality and that the care recipient is In not have an on that caregiver to demands or to support caregivers to in well-being for the including with who receive At its NHATS and NSOC have into national for late-life disability and care. The papers in this the study’s multidisciplinary community and its ability to understanding of individual experiences with late-life disability and consequences for and For the has been a scientific of to all who have to the of this for the of the to this issue was by the National Institute on Aging and The NHATS 10th Anniversary Virtual Conference was May 2021. The expressed are those of the and not represent those of the University of Michigan or the National Institute on Aging.
Author: Vicki A Freedman
Institutions: University of Michigan, Institute for Social Research
Language: English
Field: Medicine
Domain: Health Sciences
Open Access status: bronze
Funder: National Institute on Aging
OpenAlex ID: W4214728122